Childhood Cancer, Brain Cancer, F*CK CANCER, Forever 14, child loss

Author: christymits

Driving down the coast of So Cal, you see it. Sometimes moments of judgement sprinkled with understanding and genuine caring.

Without knowing your story. Or even caring for that matter.
But that is how we should treat all humans. Equally. And with kindness and non judgement.

Each stop along our way— I tried to leave a bit of Zs mark. Some subtle. Others—in your face. When we traveled to NOLA after Z passed, I started leaving stickers when able—to leave her mark. It was like she was with—and yet, she is always with us.

So to those who may be reading this after seeing a Team Zayla sticker—stick around. My rantings of childhood cancer and subsequent loss can maybe inspire. That’s my hope. That it is not all for nought.

And it was actually weeks ago. but I am so often consumed with my own daily survival. I didn’t notice.

And the significance of this? The damn fair goldfish was obtained by Zayla just weeks after her surgery for her new brain cancer diagnosis. The damn fish LIVED longer than my poor girl did with the tumor. And I cried. Because it is ALL so unfair.

Just ugh.

In one week we will be entering September, and Childhood cancer awareness month.

Next Saturday we will be hosting the 2nd Annual Bean Bags Tournament in Memory of Ms Zayla. All donations and proceeds will be put into the Zayla Mitsdarffer Culinary Scholarship for a Herscher High School student. This past year, we were able to donate $2500 to a student. This is something that Zayla would be very proud of. Making a difference. Please join us…..if you don’t want to play, come out and enjoy the day, donate if you can, and share in the wonderful memories of our sweet girl.

On a different note…..

I wanted to share my thoughts on what September and Childhood Cancer Awareness/Action means. Just this past week, I had a friend reach out and ask about a NFP, and if they were “good” (I love that people are asking/thinking, thank you Brett). We all have the capabilities to look any NFP up on their website and see their IRS tax forms. Yes, it can be time consuming. And there are other websites that actually do the work for you….like charitynavigator.org. Here’s the thing….many companies “appear” to be non for profit, and donate a set % of their profits to charitable organizations. But that does not make them a NFP.

Here’s the thing. If you are buying something under the impression that they are giving money to a charitable organization…..and your sole purpose of buying said item is for what they are supporting….PLEASE think twice about this. Unless you truly wanted said item, and were going to buy it anyways, the marketing of selling things to give a % of proceeds to a charitable organization is BULLSHIT. People that can be so excited about a product because it gives them a warm, fuzzy feel good moment that part of their money is going to XY or Z charitable organization. Great marketing. Poor taste. Really, it just reminds me of American Cancer Society using the faces of children battling cancer to get people to donate money….then only give kids 1%. COMPANIES should NOT BE making a profit by using the faces of cancer children. PERIOD.

shop.alexslemonade.org. Has some GREAT Tshirts….AND ALL the proceeds benefits childhood cancer and research. Not 10%. Not 20%. All.

Store.acco.org. Is American Childhood cancer organization. They have some awareness items such as car magnets, stickers, gold ribbon pins, gold nail polish etc…. ALL proceeds go to help children with cancer and to support research.

Maybe I shouldn’t be irritated by this. Maybe I should just keep my mouth shut, and be happy that any company would like to advertise childhood cancer awareness AND give % of their profits. Am I asking too much? Well…..my daughter DIED. And maybe, just maybe if people donated money to places that actually can make a difference, maybe someone else’s child won’t die.

That pretty much sums life up. Everything is now measured by when you were alive, and when you weren’t. A before and after of sorts.

Today I am wearing one of your scarves. At times I catch the color in my peripheral and can almost imagine a hug. Almost.

Last night the week caught up to me. The emotions. It’s an odd place to be…..on the verge of losing your sanity between devastation and anger. You can feel that edge so damn close. I can see how people do take a break. Just check out. Is that weakness?? Or just a mechanism to not self implode?!?!?

So I paint. And self medicate with some wine. Just chill. Trying to preserve my sanity.

But I think that is life. We are all just surfing along the edge of it. It’s just about time and who gets more. (Thanks Kathy) That is all. Ever.

I didn’t shop for Christmas until today. I just couldn’t. Everything about it makes me cry. Makes me angry. And just fucki== hurts.

This morning I had to help the Middle get tires on her car. So I basically kidnapped her for the next three hours as she waited for them to be done. And we shopped. Briskly.

thing is….when you are out and about amongst the chaos of Christmas, because let’s face it…that’s what it is. Chaos. You kinda get the energy of it all…..until you look at something to buy and realize you are only buying for two children now. That honestly is a really shitty part. The constant reminder that there are now two.

So as I sit here tonight….debating if I can even wrap these said gifts that I bought. Sipping the new wine that came today, I just take what I can. Unwrapped gifts. Seems fitting actually…..no kidding, Z would wrap about 80% of the gifts I bought for the past couple years. I’m just not wrapping them. So there.

Life is chaos. But most the time we bring that shit on ourselves.

Today three of Zayla’s good friends brought up a car full of toys to Comer’s Children Hospital….her hospital. She would be pleased.

“I bring Comer Cheer….for our friend Zayla who loved giving gifts to all the children. We wanted to continue her tradition!”

And as I tried to navigate this eve before Christmas eve….I was able to get through the day with the love and support from so many. The Kankakee County Correctional Officers Association chose Team Zayla Foundation to receive one of their donations…..$500! We are so thankful to receive all the support…..we are just trying to make a difference. In memory of our Z. Thanks Rich Ball for all you do….it was great to chat with you on topics that mean so much to me and our family. Childhood cancer robs many families of years with their loved ones. I know way too many children who have died from cancer. It changes who you are. forever.

I ended up making 118 signs to presale orders. It was so therapeutic for me to have this to focus on. Because honestly, the more I can keep busy, the less time for my mind to keep running. I will be making signs again come next Fall….was a great way to keep me focused and raise money for a great cause.

This year, St Jude’s Children Hospital is the recipient for all the money raised. I don’t have an exact total just yet….but I know it is well over $2500 that the signs raised, plus the Mary Gierke family donated over $1400 to our cause as well….Mary just recently passed away from colon cancer. I can’t put into words how touched I am to have others reach out and want to know how to help children with cancer.

Motivates me to keep going. She may be gone from this earth….but she will continue to make an impact. I promise.

Life after this…..is everything we want it to be.
At least we can tell ourselves that.

Seen the hawk today.

Miss you baby girl. 💔

You know that feeling of taking care of a toddler or infant? They have constant needs. So a good majority of your time is caring for them. Nurturing. Making sure they are safe. I spent almost fifteen years caring for another human. Daily needs and concerns. The sole decision makers for another persons life. Yeah. That’s cancer parents to a child.

That has ended. Abruptly. Never to have back.
And so I am lonely.
My daily musings. A kind of therapy I guess.
#cantrevealeverything
#missyouZ

Sometimes I wish, that these Holidays could just be another day. It’s funny, the meaning behind the Holidays often gets lost to “things”. Honestly, Thanksgiving should be EVERY day. We should be thankful every single day. I try to focus each day on something good…..I guess it is my forever optimism. I don’t need a Holiday to remind me of what I am thankful for.

With that being said….the Holidays are extremely hard for me….should say us….Z loved them. Every single holiday. It was a way for her to (most of the time anyways) go to a gathering….enjoy friends and family. Really, just another reason to party. When she was little and going thru treatment, there were times when we didn’t think she would be able to participate due to her counts being low and risk for infection. I think as she got older, she remembered those times and ALWAYS wanted to make the most of every day….or Holiday. And oh how she loved to eat!!!

Recently, Jason and I, and the girls went to San Francisco. We had a great time…..much laughter and tears. Zayla managed to send us numerous “signs” on our trip. And we left her mark on several light poles.

This was on Haight street. We found an open parking spot and this is what it was in front of. A “speakeasy” kind of bar, appropriately named ZamZam. Hello Zayla Ann Mitsdarffer.

And this picture we found while hiking through the Muir Redwood Woods…..we rounded a corner and seen this. Took my breath away. Miss you Z

Since our return from our trip I have been busy with my latest “Crafting for a Cure”. I attended a craft show last weekend and raised over $300 for St. Jude’s and childhood cancer. Since then, I have been taking orders for signs. So far I am up to 85 orders and I have already sold 14!! My goal was to make 100 of these….looks like I have done so!!! I ran out of old picket fencing, but my brother has graciously offered to tear down his old shed with some amazing old wood to use….and it should help me complete my orders. I am also very thankful to some awesome friends who helped last Sunday…..and hopefully the next couple Sundays to get these orders filled. We will have raised $2500 for St. Jude’s once all 100 orders are filled. That’s amazing!!

I have been delaying sharing the hand casts that we received a couple months back from the Beazley’s. I guess my heart wanted to keep them for us…..kind of hoard them I guess. They turned out amazing and I find myself at least once a day caressing Z’s hand. They are so lifelike that I can almost imagine the warmth and sweat on them….Z always had warm and sweaty hands.

Giving Tuesday is coming up….and if I could have just 5 of my friends/family choose Emily Beazley’s charity that would make my day!! You can see their website at http://www.kuresforkids.org/

I have been given two pairs of LulaRoe holiday leggings that I am going to sell tickets to raffle off on FaceBook. Each ticket will be $2, or 3 for $5. All money raised will go to the Beazley’s and their kures for kids charity.

I also wanted to share and thank the Kankakee County Sheriff’s, patrol and corrections for choosing Team Zayla Foundation for their No Shave November charitable donation!! Warms my heart to see the affect Ms Z has had!!!

Finally, there have been many people who have reached out to us the past couple days, knowing how difficult the next month is going to be. This has been my experience the past month….

“The hardest part of child loss is that moment when our intelligence and emotions meet and understand—really understand—the finality of our loss. –Clara Hinton

I think some of my passion has been stolen. Maybe that is why I have been “quiet”. And focused.

I know that some of my writing can seem. Raw. Bitter. Some may say “bitty” (replace with appropriate word). At those points I think it is my passion. Leaking out into words. A way of expressing myself.

Team Zayla is really about my amazing daughter. Who is not here. But remembered.

To be remembered, you have to keep living. Some days, we feel as if we are just here. Just trying to survive without her. But, you have to keep living to truly remember those you love. Notice I say love and not loved. Because I believe loved is not a past tense term when our love ones die. IT continues forever. At least that is what my heart says.

In five days, Jason and I will be traveling to California with the two girls. Our first trip. Together. Trying to keep living.

6. It was her favorite number. It was the month AND day that she was born.

Now?? It is just an added painful reminder. Of what my heart can barely understand.

I think the numbness is wearing off. And the pain is excruciating. But. Sprinkled amongst this unthinkable pain is ANGER.

I’m angry. I’m angry that my daughter is not here. With me. I’m angry that another month has went by….and my heart wants to know what has changed??

So far this month, I have seen a local high school support the American Cancer Society with a Go Gold night for children with cancer. Say what?? With no regard or care as to what ACS does for children.

I have learned about 3 more children diagnosed with cancer. 3!!!! And that makes me angry. And it should make you angry as well. Because what are we really doing??!?

I’m angry because this week is Homecoming. Homecoming that my dear Zayla is not here to attend. And oh, how she loved to get dressed up. And socialize.

And finally, I am angry to have to explain to an employee of a childhood cancer organization of WHY I do NOT support them anymore. The NUMBERS should tell the story. Let’s see them, shall we?

As you can tell, I want to see MORE money for research. Less money for salaries. Less money for fundraising expenses. The point of Childhood Cancer Awareness Month is not only to make people AWARE that children get cancer too….the hope is that with awareness will come research so that some day there will be a Forever Cure. Because honestly, what’s the point of awareness without true change?? So please, do NOT hide behind your “good” feelings about an organization that this grieving cancer mom wants NO part of. Talk is cheap….ACTION speaks volumes.

Now, onto the GOOD….because I always want to finish my thoughts with goodness.

I am blessed that I have the strength and courage to keep pushing forward….thank you dear Zay. WE have seen much goodness this past month….

Amazing turnout for our First Annual Bags Tourney….of which a portion of raised funds went to the Daily family and Abram’s hearing aid fund.

Donations from Andy Cotter and his college friends from a summer golf outing

Limestone Middle School has a Heart of Gold and organized (in one week, amazing) a sale of gold ribbons with all proceeds to benefit childhood cancer research.

Upcoming this Saturday, October 1st is the Herscher Youth Football fundraiser for childhood cancer….at Sims Field in Herscher. Come on out and support a great cause!!

And finally, the Herscher Volleyball team is hosting an event Tuesday October 4th, Go Gold for childhood cancer…there will be items for sale (thanks Jen Nevious). I will be speaking before the Varsity game. Prayers for additional strength is appreciated.

A month of Gold was nice….but it should really be all year long!!

Miss you baby girl.

“All we ever do is all we knew, Time to wake up from this, Time to make up for it”

Grieving mother….is NOT happy. And not for the obvious reasons either.

It was brought to my attention that a local high school is donating ALL the proceeds from their childhood cancer night to….you guessed it….Relay for Life or better known as American Cancer Society. ARE YOU FREAKING KIDDING ME?????????

I decided to put my words to action…..and sent this email to the Principal and Assistant Principal at Bishop McNamara. And here’s the thing….it shouldn’t be a “it’s affecting one community more” kinda thing…..childhood cancer CAN and WILL strike again. Incidence rates of diagnoses is rising every year. There are numerous children in OUR entire Kankakee area that are, or have battled childhood cancer. Schools should be supporting CHILDREN!! For god’s sake, that should be the priority. Period.

Mr. Kennedy and Mr. Granger,

It was brought to my attention that Bishop McNamara High School is having an event Friday night that is themed, Go Gold for Childhood Cancer. Go Gold for childhood cancer was MY idea last year at Herscher. I think it is great that Bishop McNamara High School is wanting to support childhood cancer. Until I heard who the event is going to benefit.

I would like to share a blog excerpt that I wrote this past June. I did the Go Gold to raise awareness and money for childhood cancer research and families. Because I WAS a childhood cancer family. Until MY family was destroyed in March when my daughter DIED from brain cancer.

Please do the right thing. Please don’t dishearten Bobbi’s efforts to make this world right from losing her best friend. Relay for Life does NOT support children with cancer. They barely support adults with their pitiful donations to research. Don’t believe me? You are more than welcome to look up the IRS form 990 on ACS. I have. Below is that information. You are wrong when you tell a student that Relay for Life and American Cancer Society give 79% to research. That is a lie. Look it up. Facts are that it is 13.2%. Far cry from 79%. Please do share which site you are getting your misguided information from?? Directly from American Cancer Society? How about searching charitynavigator or other charity whistle blower sites??

I will be sharing this conversation on my blog and website. Please do the right thing. Reconsider using the horrific faces of childhood cancer, then giving the donations to organizations that do NOTHING for the kids you are trying to support. It is a slap in the face of the children who are battling. And it is a slap in the face to the families that have lost their loved ones to this horrific disease.

*****background note****** Zayla’s friend Bobbi (who attends Bishop Mac) went to the Assistant Principal today to talk to him about where the money is going. He gave her a website where he gets his charitable “facts” and “statistics”. She mentioned all the research (Zayla’s mom) has done and he gave his “opinion” on why some of us may not like RFL. Bobbi got upset when talking to him, she wears that heart on her sleeve. “This week’s football game is for Childhood Cancer Awareness and the proceeds are going to RFL of Kankakee”.

Another year….my baby should have been 15 this week. Instead, she will be forever 14 years old.

Don’t get me wrong, I am so grateful that we had 14+ years with this amazing human. But it just wasn’t enough. And so unbelievably unfair that you were taken too soon.

Another year…..of watching the Relay for Life event unfold in our local town. I am grateful this year that I am working today…… I don’t have to travel past this event and feel the extra hurt of knowing that people are still oblivious.

However.

Today while sitting at work, I received a text from a friend….asking where to locate the ACS information. And that text pushed me to finish writing this blog that I actually started researching and writing earlier this week. It’s just so hard to keep pushing forward….raising awareness…..when all I want is MY daughter BACK!!

And that can’t happen.

So maybe, instead of feeling sorry and dismal, maybe, just maybe, I need to share this……American Cancer Society, and Relay for Life are a SCAM! And I am not just pissed off about this because they don’t do squat for kids…..I am pissed off because there are SO, SO, SO many organizations that would do MORE with donations for ALL cancers. I know there are a ton of intelligent people that can do the research like I have. I know there are many many people that can do simple math, like I have.

Is it just laziness? Is it propaganda?? Or is it that American Cancer Society has been shoved down our throats for years….that they are helping people have more birthdays….that they are reaching for that cure to cancer……that they are “there” for Americans. I call bull.

So here is the breakdown folks….

ACS received $847,861,530 in donations in 2014 (latest IRS form 990 information). Of which, $441,686,016 was used for salaries. That is 52% of all donations go towards salaries. Salaries like that of CEO John Seffrin who was paid $1,287,247, and COO Gregory Bontrager made $1,120,038, EVP David Veneziano received $1,110,883 and Sr EVP Joseph Cahoon Jr made $1,008,931 in 2014.

Another sick thought…..$17,144,816 was paid to lobbyists. We all just love lobbyists, now don’t we??!?! Whereas $19,112,920 was paid for grants and assistance to Americans in need for programs like: Look good Feel Better program, Wigs for women, Transportation, guest room programs and other patient support systems….Can you see that just 2 million dollars more is paid to actual patients suffering from cancer versus companies that lobby our governments congressmen and women?!?! Seriously??!? Don’t you think that cancer patients deserve more? I mean let’s get real here…..all those cancer patients and their families are raising money for ACS.

That brings me to fundraising expenses…..$201,303,109 was spent to raise more money. That is 23.7% of money raised goes into raising more money. Huh, you say??? For every $100 you raise at the Relay for Life event…..$23 goes to raise more money. Sounds like a great investment, doesn’t it???

My final, and honestly the most important part…..RESEARCH! According to the 990 IRS form Mission Statement for the American Cancer Society is this: To eliminate cancer as a major health problem by preventing cancer, saving lives, and diminishing suffering from the disease through research, education, advocacy and service. Research you say?? What a joke!! $112,688,736 was spent on research grants in 2014. That is a measly 13.2% of raised funds….OR $13.20 for every $100 raised. I find this insulting. Absurd. And an absolute need for CHANGE!! Don’t keep feeding into the Big Business of Cancer….

Image result for friends don’t let friends relay image Seriously??!?! A world without cancer will NOT be due to ACS. Sorry folks…..Relay for life does not support Research….

I did see that the revenue received by ACS from 2013 to 2014 did decrease by $71,668,244. Maybe, just maybe America is waking up……

I would like to add…..A GIANT thank you to my daughter’s school (and Mrs Jensen) for changing our school’s mini relay for life event at the school…..Now a majority of raised funds (by the district teachers, students and families) goes to more fiscally responsible cancer organizations…..

baby steps…..must keep pushing forward…..my baby girl has got to be smiling down from heaven about that!!!

To ALL cancer survivors and their families…..You don’t need to walk the lap as a survivor at the Relay for Life event to feel accomplished….YOU already are!!